Zen and the Art of Flappiness

“The darkest moments of one’s life may carry the seeds of the brightest tomorrow.” Ella Fitzgerald

Two years ago next month my son was officially diagnosed as being on the autism spectrum at the age of three. I think I always knew, really. A mother’s instincts are almost unmatched, but denial and lack of information can easily override instinct.

I will remember that day forever. We were sitting in a tiny, antiseptic, badly lit room in a New York City hospital when an emotionless and oddly procedural doctor handed me a business card with the Autism Speaks website on it. Then she sent my husband and I on our way. The business card was an odd touch, like she was networking or selling dry cleaning services. I couldn’t seem to breathe well and my eyes got very blurry — a mixture of tears and the fluorescent lighting. Her voice sounded far away and my anger grew with every passing sentence. I was angry at the Doctor, God, myself, my husband, terrorists, the weather and anything else I could think of.

And yet, in the last two years, we have all moved forward.

Since that day, my life has been largely defined by two things:

1) The quest for “Zen” — for peace, understanding, acceptance, coping skills, etc.

2) Flapping. For the uninitiated, hand flapping is a form of sensory input that some people on the spectrum do when they are happy, excited, overwhelmed or anxious. For me, it is the visual representation of my son’s unique brain. It is always present. Not all people on the spectrum flap, by the way. Early on I learned a great saying from the community: “If you know one person with autism you know one person with autism.” Flapping is my son’s coping mechanism — his way out of a busy brain.

With the intention of perhaps helping another Mommy out there, here are my personal hopes and lessons from the first couple of years:

1. Autism needs a Caitlyn Jenner. Where is the living, dynamic, high-profile example of an adult with autism who is working and thriving in society? We need a symbolic, cultural moment. Autism is not a phenomenon of small children — it is about all of us.

2. People are most definitely the sum of their parts. I (try to) never make assumptions about people anymore. We always have to see the story behind their eyes — the screenplay they would write for themselves. Always remember this in all interactions.

3. We need to redefine special needs. It is fascinating how the stigma around special needs falls away quickly when you have a child in that category. We all put people in categories very quickly and discount the broader role they can play in society. This limited world view comes with a negative economic and emotional impact. Lose the prejudiced thinking and welcome a diverse society.

4. Embrace and reject loneliness. I have three young boys, a husband, a dog, and a very busy job. I am never alone. Ever. Yet I have never been so lonely. Lonely at school functions when my son does not behave the same way as the other kids. On the playground when I have to work hard to get him to play with others in addition to flapping. In social settings when people work hard to tell me how lucky I am that my son is verbal, smart and adorable — which are all true. But the subtext there is, “It could be worse.” Well yes, it could be, but it is still really, really hard. Please just say to me “this must be so hard for you.” That would be the most helpful.

5. Only the strong will survive. Marriages are fragile — we have all seen the statistics. I would be interested to see real statistics on marriages with autistic children, though. It is critical to have extreme amounts of honest, frequent communication and get help from professionals. You have to feel like you are in it together. Be kind, because symbolism matters. Make your husband (wife/partner) coffee every morning. My husband and I are taking it one day at a time.

6. Acceptance is the whole game. The only path to an open heart is to accept reality as it is. Acceptance is not “giving up” or “surrender,” it is opening your heart to reality so the future can be filled with possibility and joy. Trying to change the situation creates darkness and despair. But accepting that your child is not neurotypical opens up a clear path to a fulfilling life in society. The key is to figure out how to get to that point of acceptance — we all take different routes to get there because we all start from different places!

My son is an incredible, brave, beautiful little boy who I know has a fantastic future. In two short years, he has taught me more than I learned in my first 40 years.

Here’s to flappiness!